"CM Therapists, Dancin Dennis,PT, Adopted Sister Christy, OT, Dyna Vox Amy, S/T

Dar being pampered, even gets a night companion while she sleeps for a night or two till they get to know her. Pump turned up from 210 to 230. So thankful we are here.

Dar' schedule begins early this morning. There is a plan to have another future Barium Swallow test.Lots of things being discussed.

My plan today is to take care of some Costco shopping and then back to Enloe to be part of todays events. I think Dar is going to be a very busy young lady. She did very well yesterday, and was very tired by the end of the day. Her spirits were high all day and she helped each therapists as much as she was able during their evaluations.

Again, I am so thankful for this opportunity to have access to Enloe Rehab and the staff, I hope someday to be able to thank Dr Giab in person and introduce him to this "little angel" that he has soooo taken an interest in. I pray that one day in the future Dar will be able to say her own "thank you" to this very special man. Talk soon everyone, I hope to be able to tell you more of or very special farewell from CareMeridian in the days ahead. Things are so wild at this time I pray you will be patient. Our farewell from our family at CM was very special and very emotional.

By the way, go Jon Murphy, Headed home in early November!!!!!!!!!!!!!!!!!!.
So proud of you Jon, So happy for Peg, Kevin, Kaitlin, Molly, we love ya all. Hugs to all of you from Dar and I

Thank you so much everyone, we made it home safely and thru our first night, Maverick the "protector" is on the job as you can see. Please do not wait more than a couple of days to begin coming to see Dar, She is already improving, !!!!!! and wants to be with her friends. We love you all, enjoy the pic.

Mommas Home !!!!!! It's a bout Dawg Gone Time, Mr. Awesome is on the job and In The House

NEWS FLASH, WE ARE ON THE MOVE AGAIN!!!!!!!!!

God has smiled on Dar yet again, A physian at Blue Cross believes in her so much he has authorized a minimum of 7 days at Enlo Rehab for pump titration and acute rehab.if it takes longer to titrate or she makes good progress she can stay longer. This is what I was hoping for yesterday but was turned down. God bless you Dr Giab from Blue Cross

"Sorry for the delay much going on"

Video #2 of Dar's first foot movement since Dec 2008

Wednesday, October 21, 2009

0430 Hours

Please forgive the lapse in posts, it has been so hectic both here at home and work. To be quite truthful, I am still trying to put the events of the last couple of weeks into perspective, emotionally I feel like I've been hit by a freight train. So many things have gone on. If I were to write about all of them, it would be pages and pages.

The short version is that Dar returned to CareMeridian last Friday. She had a “pick-line” put in before leaving Marin General. The purpose of this is allowing better access to veins and such while Dar is on intravenous IV. She is taking a ‘kick butt” antibiotic and it requires periodic blood draw and testing. Dar being such a “hard stick”, the pick line allows things to go much smoother.

Dar is showing visible signs of improvement and Dr Doherty has returned and saw Dar yesterday.

Please read the following emails and be encouraged about what we are seeing. The “titration” of the pump will take a while and is not a “perfect science”, there will be ups and downs, and small increments, of both dosage and improvement.

Again, I apologize about the lapse in posts; please forgive me for keeping you waiting. I will get back on track quickly. Enjoy the emails.

Love to all,

Dar and Danny

Night before last

Danny,

I watched the video last night, and it was wonderful to see. It did knock my socks off. I will show it to Amy tomorrow and Dennis when he gets back. She looks like she was stretching her little toes. We want to see more, but I think whatever happens will happen in it's own time. I called Chad today, but we got cut off, so I will give him a call again tomorrow. Darlene was ranged extensively in her arms today with minimal crying. I think at least now the pump is minimizing the pain. Take care and I will talk with you soon. Mohammed and I are casting her wrist tomorrow. I am sooo excited.

-Christy

Thank you so much for this email. It could not have come at a better time. I feel so helpless being so far away, when I was with her these last 12 days I at least felt like I had some control. I truly hope you will see relaxed, limber Dar soon. I also hope Dr Dawson gets to see her soon. Please keep me up to speed, now that you have a full house it is a little hard to get info about Dar when I call. All are busy. Sorry to sound like a whiny, just having a hard time since I came home Friday. Please keep me posted and don't hesitate to use phone if necessary. Thank you so much Christy we both love you.

Last night

Hi Danny,

I am sorry that I did not get a chance to return your phone call. We are crazy busy at the facility, I had a hard time not walking in circles. Darlene got much attention today from myself, Chad and Dr. Doherty. I casted her right wrist and will see how it is tomorrow. Her tone seemed slightly better today at about 3:00. I got her left hand almost perfectly straight (wrist and fingers). When it closed back up I asked her to open it up and all fingers moved to open (whoopee, yahwho). She could barely do it, but she could initiate the movement. Chad did a wonderful job of explaining answers to my questions. The Baclofen is being continuously infused into her system so there should not be any certain time she should have less or more tone in regard to her reaction to the medication. I think it depends more on her positioning and comfort level as well as if she is feeling well. These all affect the tone greatly, the main concentration right now is figuring out what dosage is appropriate for her. Dr. Doherty saw her and I watched her increase the dosage and she said it will be about 24 hours before we see anything. Pretty wild with that computer thingy. Anyway, I thought you would like to know how her day was. She smiled and responded to most questions. Of course, she lights up with any mention of you. I will try my hardest to talk to you tomorrow. Take care.

-Christy

Thank you so much, I was not aware Dr. D was back. That is cool. Do you know what dosage number Dar went to? Any thought as to what Dr D thought. Do you really believe/think Dar may have the capability to have function in the future based on what you saw with the hands. This is exciting. Please keep me posted. As always we love ya. Dar/Danny.

To Dr Doherty, no answer as yet

Evening Dr. D

Learned this evening you were back and were able to spend time with Dar today.

Was told that you increased Dar's dosage, what number is she at now?

Anxious to hear of your plan for the next days and hopefully weeks at CM. Can you share what your immediate observations and reactions were today not having seen Dar in awhile?

Glad your back

"God gives us yet again, ""Another Miracle" Thank You

Darlene began moving both feet last night for the first time since Dec 2008, I am so thankful to God an all of you for your prayers of support and yet another miracle in Dar's Recovery. I hope you enjoy this short clip of an awesome event last night.

With all our love and thanks,

Darlene/Danny

"Pump calibrated more today"

October 8,2009
2013 Hours

Just a short note to let you all know that Dar continues to do well.

We are fighting a fever that rears its ugly head throught the day. Dar just broke a 100.4 fever a little bit ago.

Dr Dawson is not to concerned at this point but has ordered up another round ov IV antibiotics.

Dr Dawson has calibrated Dar's pump again today. Yesterday she was at 115 mics/24 hours. Now she is at 155.

I had been a little concerned that I was not seeing the same results after surgery as I did after the test trial. Now I know why. When Dar was given her test dose it was very,very high. It would have been the same as 2400 mic over a 24 hour period. When she had the pump placed he set the pump at 100. You can see the difference. The test trial was for just a short time and only to prove one thing, does she unlock. There is a math equation I will share later with you. My point is that Dr Dawson is slowly buildingthe dosage. We want enough to unlock Dar but not so much that she is sedated.

It is our hope to return to Caremeridian tomorrow, p[ease keep Dar in you prayers. As I type Dar is listening to Monk on the tv and is finding something very humerous. She is laughing and having a great time, Thank you all, we love you much.

Talk to you all soon,

Love,

Dar/Danny

"Dar is doing very well, thank you all so much"

October 7, 2009
1219 Hours

Good afternoon everyone, I must have been exhausted last night. After getting to bed around 1:00 am this morning. I was awaked at 6:30 wondering, “Where the heck am I”.

When Dar returned to the 4th floor after surgery we learned that her room had been changed to better accommodate my staying with her. This was a very nice surprise, the fold out bed/chair is not the most comfortable but it works.

Dar’s tone at about 10:00 last night was almost gone, she had spoken to our friend Pat Lewis by cell phone around 9:00 and even her speech was better. Dar said “hi Pat” so clearly I think Pat started to cry.

I was able to maneuver and range Dar so easily that it was amazing. Dar’s night nurse was astounded.

During the course of the night Dar developed a fever that got to 100.5, Dr Dawson saw Dar this morning at 6:30 and started more antibiotics and was not concerned that the fever was “site” originated. He believes it is more “post surgery” related than anything else. The sad news is that we do not get to return to CareMeridian today, tomorrow we will see. I am very thankful for Dr Dawson’s caution and attention to detail.

In addition to the fever, later in the night Dar somewhat returned to “old”, “pre” placement status. Not near as tight but tighter than she was at 10:00 pm last night.

When Dar was taking the Baclofen orally she took about 80 mics/day. With the placement of the pump Dr. Dawson set Dar up to get 100 mics/24 hours to start. She is just now getting to that mark of 100. This is a very low dosage, we have lots of room to calibrate and Dr Dawson said that he would probably return later today and make her first adjustment. I was curious how they make the adjustments and was thinking that they must have a special tool they insert through the skin and make the adjustments. Boy was I wrong; it is all done outside the skin with a remote wand that talks to the tiny computer in the pump, soooo cool. I never would have thought. The only time you have to puncture the skin is when the pump is filled, aint that somthin, the miracles of medicine.

Well, as I type I am glad to share with you that Dar’s fever is now 97, and she is resting very, very well. Still somewhat groggy, she has not needed any pain medication and the Tylenol kicked the fever in the butt.

Keep the fever away for 24 hours and I think we might be headed back to CM tomorrow; I am not going to fuss about it, Dr. Dawson will make the right call.

Very quickly, I mentioned that Dr Dawson wants to keep Dar at CM for at least 2 months but would prefer 3. The reason for this is that because Dar has a feeding tube she is at a higher risk for infection to the pump than if she did not have the “peg”. If the “peg” were to get infected the first place it will travel too, is the “metal” pump. If this happens we have real problems and must take immediate steps to deal with it. If we thought and or new that the ‘pump site” were infected, it has to come out till all infections are gone. If left unattended we could have catastrophic problems.

All this said Dr Dawson is going to make sure that Darlene is up to her maximum potential and safety before she goes home. Even when at home all caregivers are going to have to be very attentive and aware of signs of infections. Don’t mean to scare anyone, but these are the realities of what we have. So, we will just deal with it and do all that we can, I am even going to have a “med bracelet” made for Dar so people will know that she has the pump and to look for her ”cheat” in the event that she has a reaction when I am not around or we need to go to the ER.

Ok, that’s the short version of what is going on at this moment, I need to get back to Dar so I am going to close for now, thank you again so much for all your prayers and thoughts yesterday.

I am so excited to begin to see more of what we saw last night in the next few days, heck, the next 24 hours. It is going to be awesome folks, hang on for the ride, “Darlene Is In The House”. Love to all,

Dar/Danny

"Thank you, Thank You"

Dar back from a very successful surgery, now in a private room she is resting well and I am so thankful to all of you for your prayers and well wishes. Her doctor will be keeping her in the bay area for at least two months preferably 3. Because of feeding peg and risk of infection he is not willing to allow her home till all bases are covered. He will also deal with insurance on our behalf, yahwho!! I will give you all more information about Dar's hopefull longer stay in the next few days.

Will post more tomorrow when we hopefully return to CareMeridian. Thank you all again so much, we love you all.

Dar/Danny

"Prayers for Dar and Dr Dawson Please

Dar is resting very peacefully tonight. I had to play the part of advocate today but things seem to have settled down and Dar is being well attended. Dr Dawson spoke with me for about an hour and everything is a go for tomorrow at 10:00. Dar has been in great spirits and a pure joy to be with. I am so lucky to have this lady as my wife and best friend.I am so proud of this little angel. Thank you everyone, please pray for her tomorrow and Dr Dawson too.

Dar's rommy was discharged earlier, so they are going to bring a cot in and I will stay with Dar tonight.

Surgery at 10:00 in the morning, please pray for Dar and Dr. Dawson.

Will keep everyone updated.

Love ya all,

"I ask for your support"

September 4, 2009
0800 Hours

This morning as I sit in the front room, having a cup of coffee, with Dar’s favorite candles burning I find myself thinking back to the early days of our present saga.

I remember being told that there was no chance that Dar would recover, that she was not going to regain “purposeful movement”, that for every day there was no progress she would be destined for a life of nothingness.

For those that have been following the blog, we know these early observations not to be true.

This very special lady has and continues to show how much we as mere mortals know about the love of God and the power of prayer.

I’m not going to list all the miracles we have seen, I am not going to remind you all of the things that Dar has done that defy all that was said early on, all you have to do is read from the beginning of this story way back in December of 2008 to realize that God has been very busy in this young ladies life.

All you have to do is read and you will see all the people that God has brought into Dar’s life for a specific purpose, to perform a specific task, to shed light on her needs for recovery.

This does not even take into account all of the people that God has brought into “my” life, the new friendships I have made because of similar tragedy to another. The bonds that I have made with families like the Stewarts, the Murphy’s and the Spitzers.

I find myself this day so overwhelmed with thoughts and feelings that I can’t even put them into words. My usual ability to ‘put to pen” is fragmented, confused, and totally askew this morning.

Maybe my “state of confusion”, my apparent inability to structure my thoughts is caused in part because of what is about to happen. Maybe I am just tired, by no means am I fearful, I am not “weary” of my circumstance, I am not angry at God, I think I am just in need of what I would selfishly call “some fishin” time. A little “me time” to refuel my tank so as to be fully prepared for the next few weeks ahead.

Tomorrow, Dar and I head to Marin General Hospital at 0800 hours and prepare for what may very well be a huge turning point in Dar’s recovery.

All of us connected with Darlene’s recovery, friends, family, professionals and you the readers wait with bated breath for what we may see later this next coming week. The thought of what may be is so exciting. To hope and allow ourselves to believe that later next week Dar could have command performance over her arms, legs, hands and fingers is just astounding. Not to mention that this little pump could also aid in Dar’s ability to speak without as much difficulty is just mind blowing.

It’s no wonder that I am having a hard time keeping thoughts and feelings in check.

Having watched Darlene over these many months take small steady steps back to “life” is and has been and will continue to be something that I will not soon forget nor take for granted. This little lady has the fight of a giant, the heart of an angel, and the spirit of one that loves life, family and God. I am very lucky to have this lady as my wife and best friend.

I ask something special of all of you the readers this week. Please hold Dar up in your prayers as she has this very special procedure. Please pray that Gods hands will be guiding Dr. Dawson as he places the pump. Please pray that those attending Dar before, during and after the procedure will be blessed with a little something extra as they too learn how special this lady is. Please pray for me that I might find little moments of rest while Dar is resting so that I might be able to attend to her, as she needs. I would pray that this outing would be better than the last.

Stay tuned everyone; at a minimum we are going to see Dar in much less pain and discomfort because of this pump placement.

As I predicted, I believe we will see Dar able to reach new goals, grab more stars, and be able to do more for herself than ever before. I believe that it is totally possible that “Dar’s Recovery” is about to make a dramatic change.

“Dar’s Recovery, A Journey Back To Life” continues, thank you all so much for your support and prayers.

Love to all,

Dar/Danny

PS, almost forgot, yesterday Dar spent over 2 hours without her headrest on her wheelchair. Dar was able to fully support and control her head. This is what therapist’s call, “significant” improvement. Keep in mind this is before pump placement; imagine what we may see after placement. I hope you are just a little bit excited too!!!

Dar also worked with her “communication” device and although there were a few “bugs” with the machine, she is able to make it work and navigate through some of its programs. Again, “significant improvement”.

“I Love You Dar and I am so very proud of you" Danny